How do person‐centered outcome measures enable shared decision‐making for people with dementia and family carers?—A systematic review

Abstract Objectives To identify published evidence on person‐centered outcome measures (PCOMs) used in dementia care and to explore how PCOMs facilitate shared decision‐making and improve outcomes of care. To build a logic model based on the findings, depicting linkages with PCOM impact mechanisms and care outcomes. Design Mixed‐methods systematic review. We searched PsycINFO, MEDLINE, CINAHL, and ASSIA from databases and included studies reporting experiences and/or impact of PCOM use among people with dementia, family carers, and/or practitioners. Groen Van de Ven's model of collaborative deliberation informed the elements of shared decision‐making in dementia care in the abstraction, analysis, and interpretation of data. Data were narratively synthesized to develop the logic model. Setting Studies were conducted in long‐term care, mixed settings, emergency department, general primary care, and geriatric clinics. Participants A total of 1064 participants were included in the review. Results Ten studies were included. PCOMs can facilitate shared decision‐making through “knowing the person,” “identifying problems, priorities for care and treatment and goal setting,” “evaluating decisions”, and “implementation considerations for PCOM use.” Weak evidence on the impact of PCOMs to improve communication between individuals and practitioners, physical function, and activities of daily living. Conclusions PCOMs can enable shared decision‐making and impact outcomes through facilitating collaborative working between the person's network of family and practitioners to identify and manage symptoms and concerns. The constructed logic model demonstrates the key mechanisms to discuss priorities for care and treatment, and to evaluate decisions and outcomes. A future area of research is training for family carers to use PCOMs with practitioners.


INTRODUCTION
Dementia is a leading global cause of serious health-related suffering, with an estimated increase of 246% over the next 40 years. 1 As the number of people living with dementia is rising so is the number of people dying with it, with deaths estimated to increase from 59,000 to 219,000 by 2040 in England alone. 2 However, the period before the end of life brings its share of challenges for the person living with dementia and their families. As dementia progresses, people may struggle to communicate their symptoms and concerns due to declining cognition. This may leave problems undetected and undertreated in the last months and years of life, causing distressing symptoms and jeopardized quality of life. 3 Person-centered care is a cornerstone of dementia care that seeks to deliver care aligned with individual priorities and preferences. 4 Communication and shared decision-making are key components of person-centered care 5 to assess symptoms and care priorities, agree and review care and treatment plans. 6,7 For care to be person-centered, it is essential for the person with dementia to be involved in the decision-making process regarding their care and treatment. [8][9][10] Poor

Study design
This systematic review drew on the guidance of Pope et al. for the conduct of narrative synthesis, 15 and is reported in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analysis (PRISMA). 16 A protocol for the review was registered on PROSPERO (ID: CRD42020189292).

Theoretical underpinning
The model of Groen Van de Ven of collaborative deliberation in dementia care networks underpins this review's understanding of shared decision-making. 17 This model comprises seven important elements to shared decision-making, such as involving the network of an individual when decisions are to be made. This network involves the individual themselves, and their family carers. We described in Table S1 each element of the model and how we used them in our review process, such as abstraction, analysis, and interpretation of review data.

Eligibility criteria and study selection
Studies of any design that used quantitative, qualitative, or mixed methods to report on the experience and impact of PCOM use among people with dementia, their family carer, and health or social care practitioner were included. Studies of any assessment measurement tool used in routine care, such as a pain assessment tool, 22

Data extraction and management
A template was used to extract and capture data from each study including its design, sample and setting, the PCOMs used, shared decision-making elements, and outcomes. 18 We extracted the effect of the intervention on process and quality of life outcomes. Data from all included studies were used to populate the logic model, including context, intervention, and outcomes. We extracted the nar-  to assure consistent appraisals. The MMAT contains five quality criteria that are rated as "Yes," "No," or "Can't tell," and each study scores from 1 to 5, with higher scores indicating higher quality. 24

F I G U R E 1 PRISMA flow diagram
The quality improvement studies were appraised using the Quality Improvement Minimum Quality Criteria Set (QI-MQCS), 25 which includes 16 domains that are rated as "met" or "not met." Although, the QI-MQCS does give quality threshold scores, other researchers have interpreted scores of >15 items "met" as perfect quality, >12 as good, >9 as moderate, and ≤9 as insufficient quality. 26 We did not exclude studies based on quality rating; rather this was used to identify areas of uncertainty in the findings and logic model, such as components with low quality evidence.

Data analysis
We used tabulation and grouping techniques to inform a narrative summary of the data. 15 Information on context, PCOMs' components, and shared decision-making were tabulated. Data on shared decision-making and delivery were transferred to NVivo 12 for analysis. 27 Data were inductively analyzed by J.A. and discussed with C.E. and C.E.S. to identify delivery themes and implementation requirements. Shared decision-making data were coded and deductively categorized into themes informed by the model of shared decision-making of Groen van de Ven et al. 17 . Areas of similarity and divergence across shared decision-making elements were explored.
Quantitative data were collated and narratively summarized, such as outcomes.
We used the results to develop a logic model (a diagrammatic representation) of how PCOMs facilitate shared decision-making. 28 We populated a logic model template with the extracted data from included studies, such as setting, population, PCOM components, and outcomes. The model describes the anticipated delivery mechanisms, intervention components, mechanisms of impact, and intended outcomes.

Study selection
Ten studies reported in 12 articles met the review's eligibility criteria (see Figure 1). We identified no eligible gray literature.  29 interviews, 30 or observations. 31 Others were feasibility studies (n = 2), 32,33 pilot study, 34 pilot randomized controlled trial (n = 1), 35 quasi-experiment (n = 1), 36 and quality improvement (n = 2). 37,38 Studies originated from the United States, 30,35,37 Canada, 33 Europe, 31,32,36,38,39 and Australia. 29,34,40 Half of the studies were conducted in long-term care settings (n = 5), such as nursing homes. [31][32][33]36,37 The remainder were based in a mixed setting, 38 community, 34 emergency department, 29,30 and a geriatric/primary care clinic. 35 Health-related outcomes measured by the studies included function and activities of daily living 33 and palliative care needs (symptom assessment). 36 Process outcomes included person-centered communication. 35 (Table 2) None of the studies reported any adverse events or unintended consequences of using PCOMs on patient outcomes. There were no differences in the elements of shared decision-making achieved when using a multi-domain PCOM compared with symptom-specific PCOM.

Quality appraisal
All included studies were assessed for quality, of which six met four or more of five criteria, indicating high quality, [29][30][31][32]35,36 such as using the appropriate qualitative approach to answer the research question, and a clear research question. Two studies met two of the five criteria. 33,34 An example of criterion not met includes confounders not being accounted for in design and analysis of the studies. The quality improvement study was determined to be of moderate quality because 10 of 16 categories met the minimum quality criteria standard, 37 whereas the audit study met six categories, 38 indicating insufficient quality. Full appraisals are provided in the Supplementary Material. Table 2 describes the characteristics of the PCOMs that focused on symptom assessment (n = 5), medication management (n = 1), falls prevention (n = 1), pain management (n = 1), goal setting for function and activities of daily living (n = 1), and patient-centered communi-cation (n = 1). Six were multi-domain in nature. The PCOMs were administered mainly by the care staff (n = 6) or research staff (n = 2). Time to completion ranged from less than 10 minutes to 2 hours (during multidisciplinary meeting where multiple residents were discussed). [31][32][33]35 The most commonly reported element of shared decision-making was "constructive network engagement," which was evident in all studies, and "Recognizing the need for a decision now," which was present in four studies. 29,34,35,38 There was less evidence for the remaining shared decision-making elements ( Table 4).

Themes
From the narrative synthesis, we identified four overarching themes about how PCOMs may enable shared decision-making, including: "knowing the person," "identifying problems, priorities for care and treatment, and goal setting," "evaluating decisions," and "implementation considerations for PCOM use."

Knowing the person
This theme reflects the element "constructive network engagement" in the model of Groen Van de Ven 17 and involved the network of the person with dementia, including the person with dementia when able, the family carers, and the care professionals (see Table S4). Family involvement was crucial in the process of shared decision-making to complete a comprehensive assessment encompassing multiple health domains and to identify symptoms and priorities for the person with dementia, particularly when no longer able to express preferences. [30][31][32][33][34][35][36][37][38] The use of a PCOM to assess symptoms created an opportunity for practitioners to engage the person with dementia (when able) and their family to obtain accurate and up-to-date information about the person's symptoms and concerns. 29,[32][33][34][35]37,38 Use of PCOMs increased knowledge and understanding of the person's symptoms and concerns.
Using a PCOM formed a structure for practitioners to involve the family in assessments and review of care and treatment, and work collaboratively by discussing concerns identified. 30,31,36 "The Psychotropic Assessment Tool (PAT) questionnaire is filled out bi-yearly and on an as-needed basis on all patients at two of the quarterly family bi-yearly and on an as-needed basis on all patients at two of the quarterly family conference meetings." 37 3.5.2 Identifying problems, priorities for care and treatment, and goal setting Elements of shared decision-making in this theme were "recognizing the need for a decision now," "defining what needs to be decided on," "developing alternatives and constructing preferences through deliberation," and "trying out alternatives" (see Table S4). Family carers continued to be involved in the process of shared decision-making with "Recognizing the need for a decision now" concerned the network of the person with dementia using a PCOM to identify distressing symptoms, and then working with the person with dementia and family carer to prioritize concern and the plan and goals of care. 29 Two elements of shared decision-making were combined as they overlapped, including "developing alternatives" and "constructing preferences through deliberation and trying alternatives." The PCOM was used as the basis to discuss the symptoms and options for care and treatment, and to prioritize preferences. 34 One study identified that a PCOM is useful in multidisciplinary meetings if the meeting is structured and focused on the priorities for care of the person with dementia. 31

Evaluating decisions
This element of shared decision-making is "evaluating decisionmaking" and involved using PCOMs to support discussions and review decisions made about the care and treatment and outcomes of care (see Table S4). This identified opportunities to review the plan of care to ensure keeping up with changes in symptoms and concerns. For example: "Based on the CAPs results from the interRAI PC assessment and the accompanying manuals, care professionals were able to evaluate, adapt, and design individual care plans." 36 3.5.4 Implementation of PCOMs to enable shared decision-making Important implementation characteristics for PCOMs included "ease of use" of the intervention, "availability of a manual" detailing how to use the PCOM, and "availability of technology" to complete and interpret the PCOM, leading to improved monitoring care management.
One study in care homes reported that technology could support PCOM use with a web-based version of the PCOM, which enabled family members to access the PCOM remotely and discuss with care professionals when visiting or by phone. 32 "Touchscreen technology, while not essential, was identified as a potential key facilitator in completing IPOS-Dem, storing records, monitoring over time, and communication including online access for family members." 32 The PCOM should be easy to understand and quick to complete without specialist qualification such as a registered nurse. 32 The main challenges associated with using PCOMs included staff's lack of knowledge about the PCOM and knowledge to interpret the results to inform the assessment and decision-making about care and treatment. 31 Using a PCOM to assess pain for a person with dementia required nurses' expertise to identify discomfort and pain, assess, manage, and monitor the outcome after intervention. 29 Manuals were identified as an important way to provide training about how to use the PCOM intervention in routine care, such as frequency, and how to interpret the measurement of symptoms and change overtime to inform clinical decision-making about care and treatment. 30,32 Important requirements to use PCOMs for shared decision-making included leadership and organizational support, but "staff busyness, heavy workload, and time constraints" contributed towards the likliehood of the PCOM being used to support identification of distressing symptoms. 31,32 Despite time constraints, staff with a positive attitude toward the intervention supported adoption. 30 Staff understanding the purpose of the PCOM and potential benefits for patients was vital to support staff use.
"Leadership was seen as required to support adoption by all care home staff, ensuring that care home staff remember to use the measure, and ensuring they understand its purpose; thus ensuring that the measure is recognized as a valued tool to support care provision despite additional time burden." 32

Outcomes measured and intended benefits
Three studies measured outcomes for the person with dementia ( Table   3). These concerned physical function and activities of daily living (n = 10), 33 palliative care needs (n = 429), 36 and patient-centered communication (n = 93). 35 Patient-centered communication was determined by a validated system that described the frequency of communication relating to psychosocial and socioemotional topic. 35 One study reported the use of a PCOM to manage medications by facilitating a twice-yearly review between health and social care professionals and family carers. 37 The intended benefit of using PCOMs varied and included symptom assessment, such as neuropsychiatric symptoms 31 ; physical symptoms, such as pain 29 ; and comprehensive assessment across health domains. 30,32,36,38 An example is the Integrated Palliative care Outcome Scale for Dementia (IPOS-Dem) that assesses multiple health domains, such as spiritual, psychosocial, and physical. 32 One study focused on using PCOMs to assess, identify, and monitor risks of falls 34 by ranking fall-risk factors and using the PCOM as a discussion tool to develop strategies to manage and reduce risk of falls.
One study focused on improving communication between the person with dementia and the family carer and care professionals about their concerns and priorities for care and treatment. 35

DISCUSSION
To our knowledge, this is the first systematic review to explore how the use of PCOMs could enable shared decision-making in the routine care of people with dementia and improve care outcomes. There was evidence that PCOMs can enable shared decision-making, through "knowing the person," "identifying problems, priorities for care and treatment and goal setting," and "evaluating decision-making." "Constructive network engagement" was the most common element of shared decision-making. There was little evidence for the remaining five elements of shared decision-making, and none for integrating multiple preferences. However, it is important to note that PCOMs were not created to specifically enable shared decision-making. This may explain these gaps in the evidence base. Limited evidence from two studies linked PCOM use to improved patient outcomes, in terms of person-centered communication 35 and physical function and activities of daily living. 33 A third study reported no difference in identification of palliative care needs using a PCOM compared with care as usual. 36

TA B L E 3 PCOM description and identified mechanisms of impact
Author ( Table 4 shows the components of shared decision-making within the articles included in this systematic review.

The logic model of how PCOMs enable shared decision-making
The logic model shown in Figure 2 illustrates linkages of key PCOM mechanisms with respective elements of shared decisionmaking. These include increased knowledge about the person with dementia through undertaking a person-centered assessment involving the person, their family carer, and care professional. PCOMs allowed collaborative opportunities to better know the person with dementia and their families. This collaboration reflects the element of "constructive network engagement." PCOMs also enabled the identification and discussion of symptoms and concerns, priorities for care, and goal setting and re-evaluating the decisions made. Active involvement of the family carer and person with dementia led to improvements in patient-centered communication, physical function, and activities of daily living. The elements of shared-decision making were similar in a multi-domain PCOM compared with a single symptom/concern/health domain PCOM. This would appear to imply similar benefits in discussing care and treatments for care and improves outcomes of care. Our logic model identifies areas of uncertainty in using PCOMs such as training needs for family carers to discuss their concerns and priorities using PCOMs, and the potential ben-

Importance of constructive network engagement in shared decision-making
Involvement of the family carer was identified as crucial to support shared decision-making. This stresses the importance of relational dementia care that requires the family carer and health care professional to work together to facilitate goal concordant care, for care and treatment to align with the person's priorities and preferences. 42 The involvement of family carers is a well-reported key component of dementia care. Family carers of people with dementia provide support, are involved in various aspects of the person's care, 43,44 and are relied on to uphold the personhood of the person with dementia as the condition progresses. 45 Family carers provide the majority of care for the person with dementia, 46 and are at risk of carer burden, such as anxiety and physical ill health. 47 It is, therefore, important to consider how shared decision-making impacts family carer outcomes. An area of uncertainty in the logic model is how divergent preferences between the person and family carer may be managed, particularly when the person with dementia may lack insight into their condition. Where the person with dementia can contribute to decisions about care and treatment they may express different preferences and priorities to the family carer. 48,49 This shared decision-making element of integration of multiple preference lacked evidence in this review. Furthermore, an evaluation of decisions made is important to ensure that care provision aligns with the priorities and goals discussed with the person with dementia and their family.

Importance of involving the person with dementia in shared decision-making
This review recognized the importance of involving the person with dementia in the shared decision-making process whenever possible.
Some studies included people with dementia in a shared decisionmaking process. [33][34][35][36] This aligns with person-centered care of enabling the person with dementia to contribute to decisions about care and treatment, with involvement improving quality of life, 8  People with early stage dementia may rely less on family carers to support decisions on care and treatment. However, many reported studies describing with people with early stage dementia were excluded at the full-text screening stage as they did not include use of PCOMs in shared decision-making. For example, publications focused on dementia care mapping, which did not detail assessment or shared decision-making processes. 54,55 Only three studies quantitatively measured the use of PCOMs on process outcomes or outcomes of care, of which one was a pilot randomized control trial. The remaining were qualitative or audit studies.
Groen's Van De Ven's model of collaborative deliberation guided our understanding of shared decision-making in dementia, and network involvement is a critical component. Despite our rigorous and systematic search for relevant articles, we found only three small trials with equivocal outcome data. 33,35,36 This indicates that a research priority is for definitive trials to determine the effect of PCOMS on care and treatment outcomes. Our review findings would have also benefited from the inclusion of data on outcomes for family carers, who play a vital role in supporting the person with dementia. However, evidence of outcomes for family carers as a result of using PCOMs was lacking in this review, despite the wealth of research on interventions to improve outcomes for carers of people with dementia. 56,57 It is possible that the literature on PCOM use in dementia care focuses on benefits for people with dementia. We recognized that three of the included studies were of low to insufficient quality. We included these studies to learn about using PCOMs in routine care to enable shared decision-making, as this is the first systematic review to our knowledge to explore this topic in dementia care. PCOMs are person-centered assessments that help to understand symptoms and concerns and support conversations around those concerns and treatment options. However, they do not consider the values and habits of individuals. Our review could not explain how PCOMs would support non-verbal communications or where individuals do not have capacity to make decisions.

CONCLUSIONS
This is the first review to consider how PCOMs could enable shared decision-making in routine dementia care.